Sense and Sensibility...and Shortbread.

It is confession time.....:rolleyes:

Feeling extremely stressed this morning ( another rubbish sleep, still under house arrest, feeling like something being emmitted from a pig with the squits, no sign of pain meds that actually WORK (!)….etc., etc.…) At 7.30 this morning,I did the unthinkable and ate not one but TWO shortbreads….two of the little devils and they were NOT GLUTEN FREE!!!!!:jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop::jaw-drop:

I know- you despise me, but please hang in there I am not the monster (Cookie Monster..?!) you imagine.

Or maybe, just maybe. you are reading this thinking- ‘..So she ate two biscuits, that is hardly a tragedy.’ But this is how every aspect of life has become for me. At the moment ME is the puppet master my strings so I have to be: ‘careful’, ‘sensible’ ‘think ahead’ and be ‘well paced’ . Actually this is a rather long moment.

I am slap bang, in the middle of a flare- up that started just after Christmas, and has rapidly turned me from someone who could go out a couple of times a week (by car or scooter), and got dressed every day, to someone who feels so lousy she lies in bed for the duration, and just isn’t well enough to be up- or out. This situation is a fraught one- in my journey with chronic illness there have been times when I have been really really unwell in the short term, but things have calmed down in the longer term...and there have been times where I just got worse. I have no way to know which of these this is.

Without cure, without effective treatment or pain medication, the future seems at best daunting, and one way of dealing with this, is to focus on the things we have some authorship over. This enables us to feel that we are doing all we can ...BUT to be honest folks, some days I feel like Nero doing a violin solo whilst Rome smoulders in the background. Can a couple of biscuits be all that is standing between me and good health?

How much time does one allot to ‘things I do because illness motivates me’ versus ‘living whatever is left of my life with as much moxy as I can’? This may sound like a ridiculous question as obviously it IS hard work just being this sick- it pretty much takes up the day just making sure I take my meds, have some semblance of cleaning myself ( wet wipes probably), and changing my daily PJ’s for night-time ones...not to mention eating, Dr s appointments, ordering prescriptions and dealing with the social security system….and of course catching up on the latest ME and pain research...

Would there be more benefit in just using the time and energy we use trying to make minuscule improvements, in thinking less about being ill, and more about things that give us...well, JOY ? ( spoiler alert- I just don’t know the answer). For example at present in addition to my meds, I am taking: electrolytes, burning lavender oil, having rescue remedy ( for those ‘beam me up Scotty moments), taking arnica, eating gluten free, avoiding sugar, avoiding processed food and caffeine….also keeping a daily diary of symptoms, pacing myself…. initially, I happily got on board and bought the ticket for all of these helpful things ( I have left out the mammoth list of things that I have tried that didn’t help at all.)

I am sure I would be worse without all of the above...but not THAT much worse. The frustration lies in that for SO much effort – I am still really sick.

I still read stuff about things to eat/not eat in order to be a glowing picture of good energy and health. I just cannot shake the feeling that if Science is failing us then, food folk law and esoteric cures are failing us even more: they are stealing our hope- and our cash- in return for dreams that don’t deliver.


Hi Helly, sorry you are out of it. I don't think it is strange that we all take a good look at possible tablet solutions to attempt to feel better because anything is better than a long term crash. Every morning I made a superjuice of probiotic yogurt, blueberries other fruits freeze dried 9 veggies 5 natural powders etc etc this enabled me to get a lot of the following down alpha gpc, choline bitartrate, gingko biloba, panax ginseng, EPA oil, good multivit, magnesium, vit b complex, prebiotics, Q10, Bacopa, curcumin, alpha lipoic acid, sometimes prednisolone, vinpocetine, l-theanine, l-argenine, DMAE, reseveratrol, lion's mane mushroom, guarana, l-acetyl carnitine, huperzine A, isoflavones. Also 5-HTP, D-ribose, n-acetyl-cysteine.
On the experimental side I have consistently used GVS111 and have tried 2 weeks of a novel pharmaceutical called NSI 189. When I have HAD to i have used 50mg modafinil. My average bill on amazon etc was £100 plus a month. Why? because no one else was going to help me. The true disgrace is that we are so very sick and yet some GPs still don't believe the disease exists.
Hi Helly, so sorry you're going through such a hellish time. I hope you enjoyed the shortbreads. On the positive side, eating them will test whether you are sensitive to an occasional small dose of gluten, and if not, you can be a bit more relaxed about eating it if you want to. And if you react, you have useful information. Sorry, that's a statement of the bleedin' obvious. I really feel for you. I'm not too good either at the moment, so I'm sending good vibes across the mile or so between us. Distraction is my main weapon at the moment. Lying in bed watching TV series on my laptop. And listening to audiobooks. I hope you can find some of those small moments of joy through the pain. Or at least moments of not quite so bad. Love, Trish xxx
Yeah...I think our bodies and intuition are the best indicator for what each of us personally should eat/not eat. And, there's only so much improvement to be had by that. Hang in there!
Firstly, I'm glad I'm not the only one who differentiates between daytime and nighttime PJs ;)

Secondly, I'm sorry you're having a rough time of it. I completely get what you're saying. You live by the strict rules you've developed over years of trial and error. You follow them to a T but sometimes you have a flare up anyway. Would it be better/easier/nicer to do what you want if you could end up with the same result anyway?

It's really hard. Deciding to what degree your routine/meds are still working for you and if they are making enough of an impact to be worth the time, effort and cost.

Instead of a work/life balance we have an illness/life balance and only you know when you're getting it right. There will be times it tips too far one way but you know what you're aiming for.

P.s. I bet those biscuits tasted amazing! (Sorry, I'm in a naughty mood today!)
I can relate to this so much Helly. I'm sorry you're having a hard time at the moment. I've been in a flare since Christmas too. Sometimes just existing is hard, in a way that healthy people wouldn't understand. I sometimes wonder whether to try my hardest to do things that help my health, so to use my little energy to just try and enjoy what small amount I can do. I like bookworm's illness/life balance idea - it sums it up well! So hard to find the right balance, especially with how little brain power we all have! Hoping you find some extra spoons soon <3
Sympathies for all you're talking about. I am quite unable to keep up with recommendations re supplements, food regimes and medication. There's always something new. Not being able to read much doesn't help. Feel guilty sometimes that I'm behind (still spending a lot), but think we need to try and do what we can, AND give ourselves breaks. It's bloody hard to switch off from worrying, hard too to listen to the news, hear what's going on in the world (mostly without us). Creativity has always helped me. At the moment I try to write, sometimes spend a whole day on two sentences, but if I get to a point where they are beauti- and meaningful I stop feeling so useless. For a moment...

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